What I want you to know about being a “heart mom”

What I Want You to Know is a seriesof reader submissions. It is an attempt to allow people to tell their personal stories, in the hopes of bringing greater compassion to the unique issues each of us face. If you would like to submit a story to this series, click here. Today’s guest post is by Stephane.

Every parent knows their child will one day have their heart broken, and that they won’t be able to fix it for them. That one day for me was the day my daughter was born.

Meredith squawked right after her head was out, before I even finished delivering her. “What a healthy baby,” I thought. She was placed on my chest, and my husband cut the umbilical cord. Then the code pink team whisked her away to the level 2 nursery. They told us she had a pneumothorax – air around her lungs. Then they told us she had a hole in her heart. A well-meaning doctor told me that she wouldn’t need surgery in an effort to comfort me. When I found out from the pediatric cardiologist two days later that she had a condition called Tetralogy of Fallot and may need multiple surgeries, I wanted to punch that doctor in the face. I ignored the call when she tried to check in on us after I went home.

Her immune system was compromised, so I couldn’t take her out. I couldn’t have help come over without masks and full surgical scrubbing before they held her. I battled post-partum anxiety and mastitis, while working to keep my baby from crying because she could turn blue if she wailed for too long.

To those who have never been through it:

I want you to know that some days I just knew she would be fine. Others I lay awake composing her eulogy in my head. And chastising myself because it sounded too much like the one Robin Williams gives for his son in “What Dreams May Come.”

I want you to know that “I know how you feel because my son/daughter…” was not even remotely helpful unless the person’s baby had a heart surgery. I know that the worst thing to happen to your baby is the worst thing to happen to you no matter what that is, but you don’t know how someone feels unless you’re in it. I have no idea what the parents of children with cancer, or MS, etc feel, and I would never presume to say I did. The need to show solidarity is a strong pull, but just letting the person talk/vent is a greater gift.

I want you to know that “you’re so strong!” is even less helpful. Because I didn’t feel strong when I was up at two in the morning, holding my baby because I didn’t know how much time I was going to have with her. Or when I had to let my husband hand her off to the surgeon because I couldn’t bear the thought of letting them cut her open, even though I wanted them to save her life. Or when I cried in the bathroom because I’d had to hold her down while they stuck her nearly a dozen times trying to re-insert her IV. And in those moments, I felt like I was letting down every person who told me how strong or brave I was.

And I want you to know that the 10 days in the hospital as she recovered were the longest, most exhausting of my life. Her doctors and nurses were amazing. But not being able to pick up my baby and comfort her when she hoarsely cried around her breathing tube was a special kind of hell that I don’t wish on anyone.

I have seen, since Meredith’s surgery, posts online from people who want to terminate their pregnancy because they found out at their 20 week ultrasound (my doctors didn’t catch the hole at mine) that their baby has the same condition as she does. To those parents, I want you to know that my daughter is the best thing that has ever happened to me. My CHD warrior princess is the most amazing, brave, beautiful thing I’ve ever seen. She walked just shy of 8 months. At 9 months, she gives kisses and high 5s, and puts up her arms when asked “How big is Meredith?”

She will need at least one more surgery. It could be when she’s 5, or when she’s 20, which isn’t the most helpful range for planning her little brother or sister. And we will know she needs that surgery when, essentially, she starts to show signs of heart failure. That’s a whole different sort of scary. In the meantime, she’ll need antibiotics when she goes to the dentist. She may or may not have exercise fatigue. The outlook is amazing, especially compared to years ago. But she will always be unique.

But mostly, I want you to know that while my daughter’s heart is defective, she is not. She is perfect. She is brave, and sweet, and funny. And as special as she is to me, she’s also just like any other baby. She has explosive diapers, she throws her spoon on the floor, and she puts everything in her mouth. She gives slobbery kisses, and cries when she’s sick. She climbs all over me, sticks half-eaten puffs in my mouth, and thinks it’s funny when I sneeze. She is amazing. And I wouldn’t trade my life with her for anything.